• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Search results

  1. Athene

    Choline causes brainfog

    Do you have any BHMT polymorphisms? I think that is the one which makes most direct use of choline.
  2. Athene

    Hypogonadism in male child?

    I'm not asking for advice on medical management of a child, though, Jonathan. Do you think I am about to go to the pharmacy and buy some testosterone and syringes? Come off it. I wish you'd read my message properly, the one where I asked for ideas on what to DISCUSS WITH my child's doctor. If...
  3. Athene

    Hypogonadism in male child?

    Do you think 9 years old is too early for me to worry about this? Or should I ask the doctor to test those hormone levels? She usually agrees to check things if I ask her, but she's not exactly proactive in trying to figure out tricky problems.
  4. Athene

    Hypogonadism in male child?

    I was not sure where to post this but I guess hormones are relevant! BACKGROUND My son was diagnosed with CFS by KDM aged 4. He has had Lyme disease and bartonella since birth and has plenty of symptoms of both - which of course overlap with CFS. He is now 9. He has adrenal fatigue, morning...
  5. Athene

    My 23andme results - any thoughts?

    Hi WendyH, Your results look pretty similar to mine and I think you've had very good advice from Valentijn. I take 800mcg of metafolin to hop over the MTHFR polys and 5,000mcg sublingual methyl B12 a day for the MTRR one, and that seems to be working great for me. People with the VDR polys...
  6. Athene

    Chlorella allergy?

    Both very interesting. I thought humans weren't supposed to be able to digest cellulose anyway? Mould might be the explanation for me as I am very allergic to it. BTW I read the entire Andy Cutler book and never did his therapy as I was not convinced it would be safe. His book is structured in...
  7. Athene

    Chemical Sensitivity, fragarances, off gasing of products etc

    It's definitely something toxic put in products from China (which seems to be everything these days). I've had to throw away two pairs of shoes so far because fumes wafting off them gave me killer headaches every tie I wore them. As Caledonia said, you need glutathione to detox. When the...
  8. Athene

    How to make my husband take me home when I'm tired?

    Hi folks, I actually have had offers to go and lie down. Our hosts are always very accomodating like that, they've always been extremely hospitable. It's just that then I'm on someone else's bed, the level of dustmites sets off my allergies, and I just don't feel comfortable without being able...
  9. Athene

    How to make my husband take me home when I'm tired?

    SOC, you hit the nail on the head with the fact that it is socially isolating for my husband too. I've always encouraged him to go out and take our son out as much as possible is it is certainly healthier for both of them. But my husband doesn't really enjoy himself when I'm not there, he just...
  10. Athene

    How to make my husband take me home when I'm tired?

    I've been getting better lately, and I do actually feel like going out sometimes with my husband. The problem is, when I'm worn out and want to be taken home, he just won't get the message. e.g. Last weekend he sugested going to a little town in the mountains about an hour away. On the way...
  11. Athene

    Just found out I'm histamine intolerant, does that mean undermethylated too?

    For what it's worth, I've bveen taking9 grammes (yep, 9,000mg) of vitamin C a day for almost 2 years and I have improved pretty marvellously during that time. My allergies and histamine symptoms have gradually diminished (i've changed my diet, not only added vit C) and had no adverse effects...
  12. Athene

    Why does pregnancy often banish CFS symptoms?

    That's very interesting. Since I have ghastly pale skin and cannot tan at all (despite living in Sicily), would that mean I have an abnormal low level of these? My mother swears I used to tan really well when I was a kid, and I have read many times that being really pale is typical in CFS, so...
  13. Athene

    All gone wrong on the anti candida diet - HELP NEEDED.

    For what it's worth, I used to teach English to a microbiologist who was researching H pylori. She saids tests often come up false negative and it's worth getting tested several times. There are different tests as well, blood, poop, I cannot remember what else, and it is worth trying various...
  14. Athene

    All gone wrong on the anti candida diet - HELP NEEDED.

    Interesting about the oats. I used to eat lots of oats, but since getting a gluten allergy, they upset my tummy too much now. The Omega 3 info is reliable. Apart from being what my doctor told me, it is also printed on my bottle of omega oils, which means there has to be scientific proof of it...
  15. Athene

    Who has developed a bloodhound sense of smell since getting CFS?

    I've just been told you can get the questionnaire either from the BCA (www.b-c-a.de) or infectolab, which does the testing (www.infectolab.de). Generally, you get faster answers if you email a clear question rather than wait for the Doc - he's terribly busy!
  16. Athene

    Who has developed a bloodhound sense of smell since getting CFS?

    They do test for all the tick borne coinfections, but I've been told they don't use that questionnaire any more. But still ask, that may have been wrong. It guided me to gest tested for three infections I was positive for, that I had never even heard of. I don't know what the UK GP would make...
  17. Athene

    Children-pregnancy- any experience? Help!

    Alexa, Does your husband have any flexibility with working hours? Would you be able to cope financially if he reduced his hours and did a significant portion of the childcare to give you time off? My husband managed to shift his hours around so he starts work at 7.30 am and gets home at 2.45...
  18. Athene

    Children-pregnancy- any experience? Help!

    Hi, I haven't read all the other posts but I'm going to tell you my story. I have a son of 6 who was conceived when I was in remisison. As soon as I weas pregnant and came out of remission and fell into horrendous relapse! I spent nine months feeling at death's door, vomiting on everyone I...
  19. Athene

    Who has developed a bloodhound sense of smell since getting CFS?

    Are you getting enough zinc? The commonest cause of losing smell and taste is zinc deficiency. If you have any white spots on your finger nails, that's a confirmation of it!
  20. Athene

    Who has developed a bloodhound sense of smell since getting CFS?

    I have a super chlorine aversion and I know 3 ways it can harm us. 1. in drinking water it kills off probiotic bacteria, more than it kilss the bad ones, so it's bad for gut flora 2. it has to be sulphated, and having leaky gut means you are failing to sulphate the cells lining your gut. KIt...
  21. Athene

    Who has developed a bloodhound sense of smell since getting CFS?

    Those electric jolts are a surefire lyme symptom and I don't know of any other illness that causes them. The initial flu is also typical if stage 1 lyme. As you said, Elisa it not reliable. You could ask your doc for a Western blot and insist on heving the printout of all reaults adn all bands...
  22. Athene

    does anyone feel better when they dont eat?

    Have you tried taking the enzymes? I took the tablets forms from Kirkman for a while but they didn't help at all. I haven't eaten gluten for years now and I don't think that it the whole story, at least not in my case. Though I do agree it plays a role - for me, eliminating it helps a lot.
  23. Athene

    my stomach swells like im 9 months pregnant..anyone else?

    Hi newradost, Yes, I react to histamine in foods, but I also have my own allergic reactions to quite a lot of foods, and these seem to be worse than the general reaction to existing histamine. I have a chronic high count of eosinophils (it's called hypereosinophilia) and raised basophils too. I...
  24. Athene

    Rock bottom, please help

    Good luck, and please let us know how it goes!
  25. Athene

    doxycycline... where's a good site to buy from?

    Hi Liz, No problem. Please PM me your email address as the herbal therapy is in PDF and word docs. It comes from www.bca.de They have a bit of info on their website but not heaps. The people who sell the recommended herbs in convenient mixes (so you use 4 bottles instead of about 25, and...
  26. Athene

    Liposomal Glutathione

    I have been spreading my liposonal glutathione out throughout the day too, and it works really well like that. I have also tried stopping it for a few days at a time and taking it on an "as needed" basis, in the hope that will also help prevent the day when it just stops working. I take it...
  27. Athene

    Who has developed a bloodhound sense of smell since getting CFS?

    Very interesting, thank you for that!
  28. Athene

    Rock bottom, please help

    Yes, your doctor should prescribe this, but you must know 2 things. First, you have to insist he tests all 3 things, as many doctors think it is enough to test only TSH. They also sometimes test total T3, but you need to test Free T3 and Free T4. Second, insist on having the printout of the...
  29. Athene

    my stomach swells like im 9 months pregnant..anyone else?

    My redundant colon was diagnosed in a colonoscopy. The standard tube thingy that they stick up you for a colonoscopy (sorry can't remember the word right now) is 3 metres long (9 feet). A normal adult colon is about 6 feet long (2 metres). After my 7 colonoscopies they have always said - with...